Feeling Scared and Hopeless

Hello, 

I need to begin by saying that I have not yet been diagnosed with any form of H&N cancer. I have been reading this board for several weeks, and I am amazed and deeply moved by the truly inspiring and heartbreaking stories I have read on here. You have all been through so much and are an inspiration to everyone who hears your story. 

As for me, I feel like I am caught in a horrible limbo. I am very concerned that I may have tonsil cancer. About 4 years ago I noticed a slightly enlarged lymph node (pea-sized) pop out about halfway down the right side of my neck. It is totally painless and a bit squishy, but easily felt. For the past 3.5 years I have had painful aching and fullness in my right ear. At times, it has been bad enough to wake me up at night when I've fallen asleep on my right side. About two years ago, I noticed that my right tonsil is noticably larger that my left and frequently aches. When I have a cold/sore throat, my right tonsil is far more painful and swollen than my left and takes longer to heal. My lower jaw at the back near my ear is also tender to the touch and aches. I also have a feeling of numbness and tingling running through the right side of my face and pressure behind my right eye. 

In 2014, I saw a local ENT (the kind that mostly sees kids) about the lump in my neck and the pain in my right ear. I was scoped, but no further tests were done. I was told the lump was harmless and my ear pain was caused by eustachian tube dysfunction. A couple of months later, I went to a second local ENT for a second opinion. He also said the lump was harmless. I specifically asked if it should be biopsied. He said he could, but it would only be for "anxiety reasons". I felt silly for wasting their time and tried to get on with my life. A year later, in 2015, the right tonsil pain became noticable. I went back to the second ENT very worried about the possiblity of cancer. He scoped me, said I looked perfectly fine but relunctantly agreed to order a CT scan. Unfortunately, my insurance denied it due to a "lack of medical reason". I tried again by seeing my general doctor. He also tried ordering the CT scan, but it was denied again. I gave up and tried to feel reassured with their continued opinion that I was "fine". 

Now it's 2017 and I'm more terrified than ever. My tonsil aches daily and is quite large compared to the left side (so tiny it's almost invisible. that's normal for me).  The ear pain is constant, and I occasionally have ringing in that ear. The facial numbness and jaw pain continues daily. I tried again in April and saw an ENT with St. Louis University. He scoped me and said I looked fine. He diagnosed me with migraines. I asked about my throat, but he said he didn't see anything. In desperation, I saw another ENT at SLU a few weeks later. This time I finally got an appt. with a Head & Neck specialist who regularly treats oral cancer patients. I told him everything. He told me I needed to stop seeing so many doctors. He examined me, but did not scope me or order any tests. He diagnosed TMJ and told me to get acupuncture. I have done that, but it did nothing for my symptoms. The acupuncturist was very surprised the treatment didn't work because it usually does for TMJ patients. She, too, recommended I have a scan to be sure. She is also an RN.

This brings me to today. I am terrified. For the past two months I have been unable to eat or sleep. I am convinced I have tonsil cancer, but none of the doctors will scan me or biopsy me. My symptoms continue to get worse. My throat and ear hurt daily. I can't see anything suspicious except that my right tonsil is bigger. I  also have pain behind my right shoulder blade when I breathe/cough, and my back hurts in several places along my spine, which only adds to my anxiety. 

I have one last appointment with the H&N specialist this Friday. I am going to beg for a biopsy and/or CT scan. It has been over 4 years since I first became worried about the lymph node (still there, hasn't changed) and over 3 since my ear pain began. My husband is at his wits' end with me. The fear is crippling. I cannot concentrate at work, can't eat or sleep. Have I waited too long? How can I convince this doctor to biopsy me? I'm sorry for taking up your time with this long post, especially when I haven't actually been diagnosed with anything. Please know that I take seriously the personal battles with this disease each of you have faced. I am not usually this riddled with anxiety. I just KNOW something is wrong with my body. I know this isn't normal. I just need someone to take me seriously. Any advice would be very much appreciated. Thank you for listening.